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Hi Ginny,
I am posting to the list as others may be interested in this topic.

The phrase "gluten intolerant" is a rather nebulous term which is why I 
try to avoid using it. I prefer to use 'gluten sensitivity'. The 
sub-groups of gluten sensitivity are: gluten sensitive enteropathy 
(otherwise known as celiac disease); non-celiac gluten sensitivity; 
neuropathic gluten sensitivity, etc.
Gluten sensitivity is the term recommended by the world renowned celiac 
researcher, Dr. Michael N. Marsh. The terminology I advocate is 
congruent with Dr. Marsh's assertions and it provides some clarity, as 
it often identifies specific sites of damage induced by gluten, 
distinguishes between some subgroups, and allows even the novice to 
accurately interpret some discussions of these topics.

The varying opinions on your biopsies may have been driven by just how 
familiar or unfamiliar these physicians were with the Marsh system for 
categorizing intestinal damage, which was developed by the same Dr. 
Michael Marsh mentioned above. The Marsh system is gradually being 
adopted throughout most of the industrialized world, as older 
pathologists and gastroenterologists advance their understanding, and 
the younger ones usually learn about the Marsh system during their 
specialization training. 

Of course, the terminology I recommend also makes it very clear that 
there are a number of types of gluten-induced damage to various body 
systems. Dr. Rodney Ford, on the other hand, has offered the term 
'gluten syndrome' to incorporate the various groups of gluten 
sensitivities into one group. I also subscribe to that choice of 
terminology. Careful word choices in this regard are, I think, critical 
to understanding the broader field of gluten sensitivity, and that 
celiac disease is just one sub-set of a rather large and growing 
continuum of illnesses that require a life-long gluten free diet.

Celiac disease has long been considered the most serious of this 
spectrum and  other gluten sensitivities were considered "lesser" 
ailments. However, Anderson et al recently published findings that 
suggest that non-celiac gluten sensitivity may more frequently lead to 
serious illness or death  than celiac disease (1). If confirmed by 
further research, we may need to revise our opinions regarding where 
celiac disease falls on the gluten sensitive spectrum.

I hope my comments serve to clarify this issue.
Best Wishes,
Ron Hoggan, Ed. D.

Source:
1. Anderson LA, McMillan SA, Watson RG, Monaghan P, Gavin AT, Fox C, 
Murray LJ. Malignancy and mortality in a population-based cohort of 
patients with coeliac disease or "gluten sensitivity". World J 
Gastroenterol. 2007 Jan 7;13(1):146-51.





-- 
PK

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